Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

NF Symposium- Latest News (2)

Dr. William Knowles spoke about the latest on Gleevec drug trials. If you haven't heard of him, he was a former drug scientist at a pharm company before quitting & working on the NFCure.org full time. His twins were born, so he understands the urgent need for a cure.

I also spoke to a NF gal who told me to check out NexGenix & their clinical trials for the dermal tumors. I just signed up to be contacted. Their website: http://www.nexgenixpharm.com/index.html
She also mentioned the drug ketophine or ketofin (not sure exactly) but it was prescribed by Dr. Riccardi (who I'll see next month), which he believes reduces tumors. Its not available in the US but must be ordered from international sources.

TeeGee: Have you spoken with Dr. Weinberg in NYC yet? I've seen him 3 times for NF removals...he's very successful at removing plexis in tough areas (I saw one of his patients had a plexi removed from the eye area- I saw the &quot;after&quot; and didn't realize the plexi was once on his eye). check out his website if you haven't done already: www.hweinbergplasticsurgery.com

I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...

Has anyone tried these supplements? Do they give MGers more quality of life by improving memory and overall well being?Thanks!Barbel

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